Sunday Stroke Survival: What Are Your Fears?

Are you afraid you'll stay impaired for the rest of your life? I just past my 5th anniversary living post stroke.  I can tell you honestly, that the thought has crossed my mind quite a few times over the years.

If I'd had my way the recovery process would have taken a couple of months. I imagine this is true for most stroke survivors. In my case, I was making great strides towards just weakness rather than paralysis for the first couple months. If strength of will was needed I would have succeeded. Unfortunately after the first two months an injury occurred stopping most forward progress on my right upper limb. Then, within six months another stroke set me back to square one in my recovery and took some other things with it like my reading comprehension. Plus the high tone that was present with the first stroke became the dreaded, constant spasticity.

 But looking back over the past five years, I haven't lived my life in a vacuum waiting for my recovery. There have been many times over the years that I have had fears; both great and small. Who doesn't, right? Everyone has had periods of being fearful. I'm no different, although I don't focus on them as many do, but look up to my Heavenly Father for relief. I don't focus on what might happen or never happen.

When you are afraid, where does your focus lie? When you are a child, you ran for comfort to your parents. But where do you go now that you are an adult? I can no longer run to my earthly father. He loses ground on his earthly toe hold daily. I run to my biggest, baddest Daddy anywhere...God. But still the thought still nags at the edges of my consciousness after five years... will I be like this the rest of my life?

Truthfully, I hope not. But it sure looks that way from where I'm sitting. All the gains I make with the Botox and the dry needling is one step forward and two backwards. It gets really frustrating and tiring. I'm constantly in battle mode against my spasticity and weakness/paralysis. I'm still trying to get to the larger steps forward and smaller steps back stage. I am beginning to doubt and waver. Is this a fight I can't win? I've never had one of those before. Yeah, I've done my fair share of adaption and compromises. I consider those a win because I do get what I'm working towards. I'm thankful for even partial wins.

My solution...
As I said before, I'm not living my post stroke life in a vacuum. I attempt something new every day. I used to say learn something new every day, but I'm still in the relearning stage. Part of me fears that I'll be in this stage forever. After a stroke, there's too much to relearn. It all takes hard work and almost daily reeducation just to keep my mind working properly. Ah heck, my mind has always had quirks that enabled me to be creative in all ways. Just never this huge of a quirk to overcome.

Alive, awake, aware, active

I found this "Truth Time" clock on the internet. I found it to be an excellent example of living post stroke. On the quarter hour are the words: Alive! Awake, Aware, Active. First of all, as survivors, we are alive! Our stroke didn't kill us. Some of us wish that it had. I know that feeling, but it didn't.

Awake appears next going clockwise. Get it, clock wise. Your brain just had a big insult happen to it. Wakey, wakey time and shake it up. Nothing is worse than wasting brain power. Granted we have less brain cells than we did before, but the average person is purported to use less than 10% of their brains so we killed off a few thousand cells, we still have 90% that we never used before. Okay, it's like 75% left in my case, but still time to wake it up and use it. We're alive!

So it's on to the next quarter, Aware. Because we are impaired both mentally and physically, we always have to be aware of everything. Our surroundings so we don't hurt ourselves. HAHA! This doesn't work for me to well. Aware of what's going around us. If we just lay around feeling sorry for ourselves we miss out on life. We are alive!

The last quarter is Active. You remember the old saying; "if you don't use it you lose it?" So you are paralyzed. You can't talk right. You're brain damaged! Accept it and go on. Nothing will never be the same ever again even with full recovery because there will always be an again. You have PT exercises to regain the use of useless  limbs. These exercises also exercise your brain too. Make your brain do jumping jacks. Play hopscotch over those damaged areas. Each day I push myself against my limits. I may fail today to accomplish it but there is always tomorrow. Make your brain figure out how to do those things that you really want to do. Get creative. This exercises your brain also. Don't live on the pity pot. Self pity can be an morbidly obese, lazy way out if you over feed it. Allow yourself moments. Set an alarm to time it. When the alarm goes off, get active. We are alive!

You have fears. That's understandable. Strokes or any life changing event can bring them to a head. I just had one of those crazy images pop into my head when I typed the previous line. I pictured a zit. So when you have a zit comes to a head, what do you do for it? Pop it. Realize that the fear stems from a problem or perceived problem. Face it. It might happen. In my case, I will be like this forever and not recover from my strokes. So my attitude is to live each day the best I can. Will I have good days and bad or horrible days? Yep!  Am I limited in what I can accomplish? Yep! But if I don't figure out how to do it, it's my fault! Sure there are some things that would be easier to do with two working arms or legs, but I'm not the only one on earth facing this issue. Just like everyone else on earth. So is it really so different? Fears are fears. My question is what are you going to do to resolve them? Things my be difficult, BUT...

Nothing is impossible.

Thursday Turmoil ~ While Reading Blogs

Today, I was going through my blog roll and hit a "friend" who was in turmoil. Les Floyd is facing the demise of his mother.

I have to say that I've walked in his shoes. Losing a parent is everyone's greatest fear who's had a loving parent. Now for the rest of the story...

The year was 1988. My mother had a sore throat and went to her family practice doctor. No big deal, right? The doctor looked down her throat, felt her lymph nodes, and palpated around her throat and then focused his attention on her thyroid. He focused so long on the area her skin had actually started to turn red.

Concerned, I asked him what he was feeling. He said their was a knot about the size of a kernel of popcorn. He invited me to feel and sure enough, there was one. Given my mother's history, surviving the Nagasaki atomic bomb, he recommended a surgical consult. He would have done the surgery himself but he was healing after a broken hip fracture from a car accident.

So off we went to the surgeon. The surgeon diagnosed it as a thyroid goiter and my mother left armed with a prescription for iodine tablets. We all breathed a sigh of relief that it wasn't cancer which killed 100% of all atomic blast survivors. At that time we trusted doctors. After all, they spent years in school learning so they had to be smarter than us, right? Wrong with deadly consequences.

Three months later, we were back in the family practice doctor's office for a routine appointment. He look at her neck expecting to see a scar which there was none. He felt her neck and excused himself. He must of went straight to his office and got on the phone to the surgeon because we could hear him yelling. The words that engraved themselves on my mind forever more were, "incompetence," "larger," and "surgery now."

We were living in a dream world of hunky- dorry for three months believing this other doctor. Now all my fears were realized and soon would be fact. My mother underwent surgery for a thyroid removal within a week. I was at work in the E.R. The surgeon came and found me. I had been dealing with doctors for almost twenty years at this point and one look at his face and I knew all had not gone well.

"We have to wait for the report, but the tumor has invaded her thyroid, parathyroid, and her larynx. I scraped what I could off the larynx to save her voice."

Wait a minute. We went from a simple thyroid goiter to tumor that invaded? The big "C" now entered the picture. His next words were lost for the most part in my brain while it muddled through the information I was given. All except his words, " I'm sorry. I should have listened better."

He walked back to post-op and his next surgery while I was left with my new awakening. I made two calls before I returned to work. The first one was to my father at work and I filled him in on what the surgeon said. The next one was to my family practice doctor. I have to say after that I buried myself in my work trying not to think of the consequences of the surgeon's words.

By the time I got off work, a plan of action was formed but I needed to talk to my family first. We had wasted three month already and could not waste anymore time. My mother would remain in the hospital for further tests instead of being released the next day. I went ahead and made all the arrangements because I knew my father or mother wouldn't object. That was one perk of working at the hospital, I had abundant resources available.

Thyroid cancer is one of the easiest forms of cancer to cure when it is caught early. In three months we'd gone from a kernel of popcorn to metastasis. So regardless of what the pathology report showed, it was time for action and fast. Decision had to be made and questions answered from my family. I knew they were counting on me. It was a two-ton boulder of weight resting on my shoulders.

The first reaction from my father, sisters and brothers was shock. Then came the questions but I was armed with some answers. My father was grateful. Then came the flurry of trips daily to the Mayo clinic in Jacksonville, seventy-five miles one-way away. Another surgery and heavy duty radiation treatments for three more months.

Finally we were were referred to a local oncologist. "Thirty to sixty days." Despite all our efforts the metastasis had invaded her lungs fully, wrapped itself around her carotid artery and her brain. Now all that was left was the death vigil by the family except for me. I was the nurse and caregiver. I arranged the morphine, delaudid and phenegran. I gave the injection, monitored vital and conditions, and only cried when I was in my bed alone at night for a few short hours. I had quit my job at the hospital because when working with cancer patients in post-op circumstances, I couldn't keep my personal life from invading my professional one plus my mother and family needed me.

I pushed all feelings aside while dealing with my family and my mother's care. I stuffed my emotions and became a automaton doing what needed to be done. My family leaned on me for support so I had to keep it together. Until the day finally came to past.

I received a call from my father who had taken my mother to our family doctor for an insertion of a peg tube for feeding. I had spent hours during my mother during her lucid periods explaining the benefits. We had spent many hours discussing what she wanted and didn't want. A Do Not Resistant order was written and signed. I knew her wishes. Discussions about organ donation and who got what of her personal belongings. In reality they were snippets of conversations over days. Nothing personal about my feelings for her, it was basically clinical and social work.

On the day of her doctor's appointment I had a parent- teacher conference and some other things to do that couldn't wait another minute to be resolved. At the time my mind was going a million miles a second and I was slightly irritated that my father couldn't handle one simple thing without me until he said, "Your mother stopped breathing."

In disbelief, I asked a bunch of questions and I realized he was crying. The child in me got scared. I'd only seen my father cry on two occasions. Him being a former Marine and a man, real men didn't cry. He said she started breathing again on her own and was transported to the ER.

I quickly arranged for someone to watch my children and drove to the hospital. The ER doctor pulled me aside and showed me her x-ray of her lungs. How she had kept breathing was a mystery to me because she only had quarter sizes pieces of lungs that were not consumed by the cancer. He suggested this and that which I refused because she didn't want it.

The hardest moment came when my father with tears in his eyes said, "Please, Joey let them do it." I had tears in my eyes when I shook my head no. If this was the last thing a child could do for her mother, I was going to respect her wishes. She didn't want a ventilator. I brushed her bangs out of her eyes, applied the ointment in her eyes and taped them shut. When another nurse tried to interfere, one look told her to back off. She was admitted to a room upstairs to finish the waiting game.

I went home after giving the hospital a copy of her living will with instructions to call me before doing anything else to her. I knew the nurses on the floor would do it and offer compassion to my father while he waited beside her bed. I was one of them. I would do the same if the situation had been reversed. Now I had to go home and prepare my children for their grandmother's death. It wasn't a question of when, it was a surety within twenty-four hours. I had heard the death rattle in each breath she took before I left.

When the phone rang at 4 AM I knew before I picked up the receiver. She was gone. My husband tried to hold me, but I shook him off, got dressed and drove to the hospital. Her fight was over. It took me until right after the funeral to finally be the child who lost their mother. I exploded with anger fueled by grief at my father how I had been voluntarily forced into the role of constant caregiver and decision maker squandering the little time I had left with my mother.

"Joey, I never realized. You're too damned dependable," he told me after I helped him up from the physical punch I'd gave him.

You know what. He's right. I'm too damned dependable, and still am. But lesson learned, I realized how short life really was. My mother was only fifty-six when she passed this life for the next. Never again would I let circumstances stand in the way of letting everyone know how I really feel. Never.